Reversing the question – parents helping children; children helping parents. Is there a middle?

I just returned from a meeting in Europe and one of the best things about these meetings is hearing stories of families, listening to experiences, and learning about those special times when a child’s insight makes us stop in our tracks. It is not about criticism or what is wrong, right, or in between. It is just about those times when we find our hearts’ making a recording that we will remember all the days of our life.

One mom talked about all the things she was doing for her son. She described a pretty time consuming schedule that included supplements, stretching exercises, aqua therapy, as well as a very strict diet. It was pretty amazing really and I had the sense that she had achieved the perfect “10” as a mom, someone we would all look up to and wonder just how she fits everything into a 24-hour period or if she found some magic to stretch the few hours in a day. All of a sudden in the middle of her story, she had tears in her eyes as she talked about one particular evening when her son was grumpy as she started the stretching exercises. He had had a full day. As she started his stretches, he started crying. She asked if the stretch was painful. He said ‘no.’ Like all of us, she probed, asking if something went wrong at school, if his stomach was upset, if he was in pain, looking for something, anything to understand the tears. We have a natural tendency to try to ‘fix’ everything. He simply said he did not want to do the stretching tonight. With that, her fear increased and she tried to sooth him, tell him how important this was for his muscles, how much she was doing to help him. And in that very simple way that children have, he said, “You are not doing this for me, I am doing this for you.” She felt her heart breaking.

I also spoke with a father whose son is now in college. He discussed his son’s detailed agenda to include a variety of interventions squeezed in between college classes and studies. I asked about friends, about movies, about music, about laughter. This father said all that would come later. I wondered when ‘later’ was planned. This father was so worried that if something interrupted their rigid schedule, his son would lose function. He felt this regimen was essential to maintain the life his son had, the things his son was able to do at this very moment. One glitch, one change, and it would fall apart.

I remember hanging on for dear life, thinking that if I changed one thing, if I took time to breathe, time off, time to enjoy something or some activity from my previous life, things would fall apart. It felt like my life was hanging on a thread. I remember hanging everything on the future. I started sentences with ‘when this happens,’ thinking that a certain clinical trial would yield amazing results and then we would catch up on whatever it was that we missed.

Every once in a while, I think it is good to take a step back and remember, the life we are living is not a dress rehearsal, it is the real deal. There are no ‘do overs’ and no way to recover time lost. So, while we are all aggressively pursuing what we think is the best route for our sons and daughters, it is important to listen to their voice, to ensure the discipline of care includes their perspective and their opinions.

And as you make up the schedule, please include 30 minutes of laughter. It should be considered a therapeutic intervention!

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I like taking in every moment with Connor. He's fun, enjoys life and is thrilled to have more strength to do things on his own since starting his steroids. In fact, he's very insistent he does things now on his own. Hard to always let him with things like climbing hills or stairs, but he's happy to do these activities and so I follow his lead. The only thing I don't know how to handle is the resistance and disappointment I see in his face with most activities involving his hands. It's a struggle for him to write, play video games, play catch or basketball. I can see that he wants to try but that he knows it'll frustrate him. Again, I encourage but only to the point of following his lead. Does anyone have ideas on what is important for me to help him push through the struggles he seems to know he has with his hands' fine motor skills? Thank you!

Thanks for the affirmation. There's always that hesitation "Should I let him do this? that?t-ball?bicycling?" In the end I have to go with "careful quality of childhood". We (family) are now very involved in all of his activities...at first involvement was"to monitor" but now it's become "to live it with him." Too bad some of the non-DMD families don't have as much fun as we do together. :)

My son who is nearly seven today would'nt run and I would be urging him to do so. That was before I found out about his situation (a month back). When we went to the physiotherapist she told us about no running and no impacts. It was after this that I realised that he was on a run more than often and I heard myself continuously telling him not to run and jump. But 20 days down the line I have decided to do less of this, to let him laugh and play...... still not sure whether this is the right way to be.

Thanks to both Pat and Ian for sharing these thoughts with us.After the PTC trial was stopped,we realized that we had spent way to much time on Benjamin's medical condition and far too little time on his right to being a child.Since then,we changed churches to one that Ben has friends at,started going to the park and feeding the ducks, took off to take Ben to VBS every day for a week,he loved it.We started renting those $1 dvd's and getting $1 ice cream cones,play in the sprinkler at home,rode downtown to our tallest building and went to the top and looked out over the city.We've rode to Georgia 3 times,Ben likes to ride over and see the Kia plant since we passed it so many times on our trips to Atlanta to fly to Philadelphia while they were building it.I've thought about asking Kia if Ben could have a tour,so far all he's seen is the outside.As heartbreaking as the cancelation of the PTC trial was,I think it took that for us to realize we were missing Ben's childhood.Please don't misunderstand me,we hope with all our heart the trial resumes soon,but come what may we are bound and determined that Ben will also have his childhood.

Thanks for sharing...I needed to read this. I am thrilled that yesterday I took my kids to the zoo and today the park for the beginning of our summer vacation....but too many days, I forget to enjoy and cherish the moments we have.

Pat, I could not agree more! It is 'us' who are going through the pain, going through turmoils, watching others doing things we can only dream of and getting weaker. Fun, music, friends, laughter are the things that make life. While we go through the stretches, meds, supplements, appointments and all the other interventions we are thinking about the fun free time things every other kid/man/adult wants to do.